Loving Lucas - The Journey of Our Little Man with Down Syndrome

Hello Family and Friends, I'm just done. Are you done hearing about Lucas going into the hospital again? Man, I feel like a broken record! :) I say this with some sass. Of course, I love the little guy, but the hospital visits have become very tedious. I haven't shared every visit, so as not to bug people and also because some of the visits have been short and manageable. Here's what our life has looked like since the beginning of April: Long story, short, Lucas' surgery date has been pushed back for the 3rd time so it is now 7/16/25. And yes, you are reading the calendar above correctly, I am currently in the hospital as I write this. The latest trips to the hospital have been him fighting off 2 viruses Para-fluenza and our good friend Rhino virus. We were at Children's Wednesday-Friday last week for a couple nights while he fought off a gnarly fever and came back in again Sunday night and are hopefully going home tomorrow (6/3, Isabelle's 8th birthday) because...

Update: 5/14/25 (Day 5) - They took Lucas off high flow last night and he looks good this morning. They also took his blood and his kidney function looks good. So we get to go home! They want to check his blood again on Friday to be absolutely sure that his kidneys are still functioning well, but we can do that out of the hospital. Thank goodness! Update: 5/13/25 (Day 4) - There is nothing concerning on the echo, it looks really similar to the last one he had in March. So the plan is to continue to wean Lucas off the high flow support he's getting now (which is minimal). He will be weaned off completely by tomorrow morning. The other piece is to see how much diuretics he needs to be comfortable until his surgery. They have him on Lasix twice a day and have started hydrochlorothiazide to see if that gives him the last boost he needs. If he continues to look good and his blood work comes back good going into Thursday when we can talk about going home. Looks like we're seeing the ...

Hey All, It's me again. Lucas was doing well recovering at home from his cold and here we are again. 3 It's Friday 5/2 and I brought him into the ER around 8:30pm because he had been breathing pretty hard, fast and with retractions since 7:30pm. Nothing has been out of the ordinary at home so,  not sure at this point what is going on. They suctioned him,  took a chest xray and got a swab to treat for influenza b and covid. They tried giving him albuterol and when that didn't seem to help they started him on hiflow. His breathing has calmed down a bit but not completely.  Now that he is on hiflow he'll definitely be admitted. It's about 2am on 5/3/25 as I write this (still in the ER) and they got the chest xray back and he has edema in his lungs. The nurse practitioner who has been consulting with the team for updates told me that she's not concerned with with amount of fluid,  it's not pneumonia, but looks patchy and likely from a new virus he ma...

 Hello Family and Friends, Let me start out by saying life is life and God is good. My temptation is to just vomit out all the things I'm thinking and feeling but let's try to recap and then deliver new information. Ready. Go.   Lucas got a cold Monday 4/14 we brought Lucas into the ER at Children's hospital in Seattle. He was breathing hard. We got admitted that night. He got over the worst of his cold on Tuesday. Wednesday we was left with a very flemmy/gunky cough and needed oxygen when he slept. FFWD a week later, this Monday 4/21 and he didn't need oxygen when he took a nap during the day and he hasn't needed oxygen since so yesterday we started talking about going home today, Wednesday 4/23 (day 10 of the hospital stay). Because he needed oxygen while he slept a few days ago, I am going home with emergency oxygen supplies in case he needs them. He does not need to be on oxygen, but we'll have the supplies at home in case he starts breathing hard and needs...

  Dear Family and Friends, What a week! I thought I would start a new post because we are beginning a new week in the hospital. Last week was certainly eventful. In a nut-shell if you are just reading this post. Lucas is past the major symptoms of the cold he got and on Monday last week I brought him into the ER. He needed some hi-flow, but was quickly weaned and by Wednesday he was settled into having a very wet and gunky cough, he needed oxygen when he sleeps and we were still seeing his chest and stomach physically working hard to breathe. After a 24hr speed bump of him taking a steroid that made him worse! We stopped that and he's been working through those last symptoms for the last few days. In all the excitement I DID talk to the people who are going to do his surgery on 5/16 and they had to push it back to 6/11 because he can't have a virus within 4 weeks of the surgery. Heart surgery is now 6/11. So today I'm happy to report good news! This morning is the first mor...

Hello Family and Friends,  Little Lucas could use your prayers. He came down with a cold and was breathing fast on Saturday and I brought him into Children's hospital to get checked out. At that point, symptoms had just started. Some diarrhea, fever, congestion, and a wet cough. We took him into the ER, they diagnosed him with Rhinovirus (cold) and we ended up staying overnight. He didn't get worse and the doctor and I agreed that as long as he didn't look worse he could recover at home. At this point most of his fast and hard breathing seemed to be while he was asleep. He was in good spirits and breathing looked more normal while he was awake. We got through the day at home Sunday. Happy Palm Sunday everyone! Lucas started to breath heavier while he was awake yesterday (Monday) towards the evening and I suspected it would get worse overnight while he was sleeping so I brought him back into the ER last night. At 3pm we got admitted and got a room. His breathing was pretty h...